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  • If you have been diagnosed with sickle cell disease, how old were you when you received your diagnosis?join now
  • How much time do you spend per week researching, discussing, participating in social media, etc., related to SCD?join now
  • Who is the person who has helped you most through your SCD journey?join now
  • Has SCD ever interfered with your work life?join now
  • Has SCD ever interfered in your personal relationships?join now
  • Do you feel that managing your SCD experience has made you a stronger person?join now
  • Do you think others outside of your close friends and family understand the challenges you face in your SCD journey?join now
  • Have you ever felt guilty about some aspect of having SCD?join now
  • What is the biggest challenge you or your loved one faces at school with SCD?join now
  • Do you or your loved one with SCD get a flu shot every year?join now
  • How long has it been since you or your loved one with SCD experienced an SCD-related hospitalization?join now
  • Have you met an emergency department doctor or nurse that really treated you well?join now
  • What are your considerations when planning to attend an SCD conference?join now
  • What do people with SCD need most during this period of response to COVID-19? join now
  • Have you ever had trouble getting SCD medicine? If yes, what were the issues?join now
  • What items do you pack and have ready when you need to go to the ER? Please select all that apply.join now
  • What information do you think should be contained in a travel letter? Please select all that apply.join now
  • Do you trust the medical establishment as a whole? join now
  • Have you noticed any changes in how you have been treated as a patient in the hospital over the last few years?join now
  • How many other members of your immediate family have sickle cell disease?join now
  • How many members of your family, immediate and extended, have Sickle Cell Trait?join now
  • What is the average wait time for you when you go to the Emergency Department?join now
  • Have you noticed any changes in Emergency Department wait times over the last few years?join now
  • Do you have health insurance?join now
  • If you do not have health insurance what are the obstacles to obtaining it?join now
  • Is there a sickle cell provider in your geographic area?join now
  • How far to do you have to travel to obtain sickle cell care?join now
  • Have you had to delay treatment or medical appointments because of COVID19?join now
  • Have you or your loved one with SCD experienced memory loss as you get older?join now
  • Have you ever participated in a clinical trial?join now
  • Have you ever attempted to participate in a clinical trial but did not qualifyjoin now
  • Would you consider participating in a clinical trial in the future if you met the criteria?join now
  • How happy are you with your level of medical care? join now
  • Are you able to care for yourself or do you require assistance of a caregiver?join now
  • Do you belong to any kind of support group for sickle cell disease?join now
  • Have you tried to help spread awareness of sickle cell disease?join now
  • How has telemedicine benefited you during COVID-19? Please select all that apply.join now
  • What symptoms push you to go to the ED during COVID-19? Please select all that apply.join now
  • How long has it been since you or your loved one with SCD experienced an SCD-related emergency department visit?join now
  • Are you seen at least once a year by a hematologist for SCD?join now
  • After transitioning from pediatric care, did you have difficulty finding an adult hematologist?join now
  • After transitioning from pediatric care, how long was it before your first visit with an adult hematologist (or adult physician)?join now

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